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Posted 1/6/2008 7:41 PM (GMT 0)

Hi Everyone!

I am new to the Healing Well web site (in fact I just joined about 1 hour ago). I have recently been diagnosed with lupus. I am currently taking medication for my lupus. My question to the forum is....does anyone know of any vitamins or minerals that may help me?

I would appreciate any suggestions, and or advice anyone could offer.

Posted 1/6/2008 8:11 PM (GMT 0)
Welcome! Don't have any info on vitamins for ya but just wanted to give you a welcome. I'm someone will help you out.

Cute screen name!
Posted 1/6/2008 8:57 PM (GMT 0)
Hey Princess!! Welcome to the forum. I think we've all had that same question. Most of us have added some vit/supplements that make sense for our particular issues. Those who have hair loss might add biotin. Those with mouth sores mention folic acid and I think D or B12 . . . can't remember. We should probably all be taking a multi and your doc should decide if you need iron some of our meds require us to take large amounts of folic acid (methatrexate) or calcium (prednisone). This is a great question for your doctor because we are each so different. When you are planning your vitamin regime consider if the vitamin is water soluble (flushes quickly form the system) or is stored by the body (can become toxic if you take too much). I am very careful about the later. I take two capsules of fish/salmon oil, two caps of flax oil, biotin, multi-vit, 2x600mgm calcium with D, folic acid and a B complex. If you look at signatures, some of the members list their supplements. MAKE SURE that you include your FULL list of supplements on your med list for each doctor visit. Some seemingly harmless vitamins/supplements can react with meds or make problems (several have blood thinning properties). I hope you make some good friends here. Its a great place to and find people who really understand. Blessings!
Posted 1/6/2008 10:03 PM (GMT 0)
Hello Blueberry!!!

 

Welcome.  Good questions to have for sure.  I'm gonna repeat what Rosie just told you, so I'll stop before I get going here!

 

I'm on 2000mg of calcium, 1400mg of vitamin D, 500mg of magnesium, 250mg of vitamin B6, and a multi vitamin.  I was just told by my physio that apple cider vinegar capsules are really good for arthritis.  I have it in my neck.... With your RA, that might help too.

 

Like Rosie said, just make sure you get the "okay" from your doctor first before taking anything.  Don't want to end up with a bad reaction to something.

 

Ask all the questions you need to okay!

 

Ginny

Posted 1/7/2008 1:20 AM (GMT 0)
I take a multivitamin and calcium along with flaxseed oil, but the truth is my supplements vary by what my blood work shows I am most defficent in.
Posted 1/7/2008 2:21 AM (GMT 0)
OK now I'm curious. Rosie what benefits come from flaxseed oil and B6. Oh and Biotin. Never heard of it. I do take fish oil and a multi and a iron tablet.
Posted 1/7/2008 2:33 AM (GMT 0)
Flaxseed oil and fish oil has omega 3's and is good for the skin and heart AND calcium enters the body better with fat so I combine those two. Biotin helps my hair and skin. It is found naturally in egg yolks. Not sure about B6 specifically . . . but B complex is thought to help with energy and brain function and metabolism. The B's also help build blood cells. The B's are all water soluble so they don't build in your system (EXCEPT B12 which IS stored in the liver). I actually don't remember most of this stuff from day to day . . . I gradually added those particular items to my pill box gradually. Over time my docs have picked at the list and eliminated the Vit E and maybe a couple others. I include them on my med list at every doctor visit. Blessings!
Posted 1/7/2008 2:57 PM (GMT 0)
Hi, I wanted to add my welcome. As you can see, we have a great group of people here. I don't really have anything to add to what the others have already told you about supplements. I just take a daily multivitamin and then I take a calcium supplement because I'm on prednisone. Feel free to ask any other questions you have. I'm glad you joined us.
Posted 1/8/2008 3:15 AM (GMT 0)
Hi,

I go to a nutritional medicine doctor who consults with my rheumatologist, and he tested me for any nutritional defeciencies. Based on that, I take Lovaza (prescription strength fish oil), Evening Primrose Oil, Vitamin D, and Vitamin B12. He wants me to start Vitamin B1 or B2 (can't remember) IV's because I just can't keep enough in my body, but I'm putting it off because of the cost and trying to get more brown rice in my diet to help.

I've also cut out all processed foods, flour, sugar, and caffeine. In the year since I was diagnosed with everything and started to eat healthy, I've lost 70 pounds and much of the autoimmune issues are under control. I'm in a mild flare right now because I had some unhealthy food during Christmas, but I'm on a short burst of prednisone and feeling better already.

(I have SLE, RA, Sjogren's, Hashimoto's, Reynaud's, and elevated liver enzymes. They aren't sure yet if it's PBC).
Posted 1/8/2008 3:56 AM (GMT 0)
Thanks for the scoop Brandichi!! How did you find your nutritionist?? How expensive is it to see her/him? are the tests covered by insurance? If not, how expensive is the testing? Thanks so much for your input! Blessings!
Posted 1/8/2008 4:00 AM (GMT 0)
OH! and a big WOW!! on your big weight loss!! Woooo Hoooo!! I'm hoping to follow in your footsteps!!
Posted 1/8/2008 4:27 AM (GMT 0)
Thanks, AlwaysRosie!

It wasn't easy to find this doctor, I went through a couple quacks on the way, to be honest. This doctor is a holistic/nutritional medicine doctor and I found him in a holistic/new age kind of magazine. He is an MD, and i found that is extremely important when you're looking for a doctor like this. Don't settle for a DO (and my primary care doctor is a DO, so I don't have any problems with a DO otherwise). He is one of few that takes insurance, and I pay very little. (I have BCBS) Each office visit is about $15. He runs blood tests every 3-4 months and I pay about $20 for that, after insurance. So very, very reasonable. Oh, and I also take a multivitamin I buy from him, it is more easily absorbed by my body than most other brands sold in the stores.

What I generally found is that the nutritional medicine doctors that accept insurance are the ones who are legitimate; the ones that don't are probably best to avoid. Usually there is a reason that insurance companies won't work with specific doctors! There is another doctor in my area I would have seen as a second choice; insurance reimburses patients but you pay up front. I'm glad I didn't have to go that route.

I have a website somewhere with a directory to nutritional medicine doctors in the United States, I'll find it in the next day or so and post it for you. But look through some of those New Age publications and ask anyone you know who may be into this sort of thing in your area. It is SO worth it - I never believed I'd be doing as well as I am right now...I thought my life was basically over when I was diagnosed. The lupus had attacked my lungs and even one of my doctors didn't think I could make it. She is still amazed every time she sees me. I'm teaching full time and this week I'm starting to take a class at the college at night. I'm thinking of starting yoga too, but don't quite have the guts to put my still-too-large-body into odd positions in front of a room full of strangers!!!!!

I don't know if we're supposed to talk about this here, but the other thing that helped me is volunteering at my church. I'm a prayer partner, and by focusing on helping others every week, I feel so much better.

Blessings to you! :)
Posted 1/8/2008 3:22 PM (GMT 0)
To Blubryprincess: I'm sorry we haven't seen you back at the Lupus Forum . . . I always fear that our newbies may not find their way back after they post . . . just know we are thinking about you and you can post again when you find us to let us know you found your way back. Sorry we hijacked your topic . . . but its serving to uncover some great information. Blessings! Brandichi: THANKS so much. That is extremely helpful information. I have a couple of new docs right now. I've seen my new rheumy twice (old one doesn't take my insurance anymore) and am having a first appt with a new gastro next week (first one had an assembly-line for his colonoscopies and he yelled at his staff in front of patients . . . I found that too gross). I'm hoping to replace my primary care doc who I've had for over 10 years because he never remembers what is going on with me . . . I remind him and then he argues with me and then he stumbles through his notes and acts bewildered . . . scary. Anyway . . . could a doc such as you describe serve as a primary care doc?? It sounds totally possible. As far as culinary school . . . go for your dreams sis! Just make sure to include a balance of rest and activity. Us lupans can't leave things to the last minute and then cram (well, we can . . . but we pay for it). Thanks so much for the info. I might look into that here. Blessings!
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